not to trust DH to look after me. What can I do.

[RainbowRobot]

No previous health anxiety but a few things lead me to suspect I'm going to be quite ill.

Had a full day in hospital on Monday, 7am to 7.15pm. DH is totally unable to appreciate that at the end of the day, I need to eat and perhaps talk about what is going on.

How can I talk to DH about getting a grip of the 'for worse' and 'sickness' bits ahead. He's really not getting it at the moment.

[Myriade]

@RainbowRobot if you are as tired as that, then don’t replace the loo roll. Don’t do the thousands of little things. Just leave them and announced clearly you can only do xxx

Many of those little things won’t be done. It doesn’t matter. (And if they do, I can promise you that they will magically get done!)
What matters now is you looking after yourself. Think about what you would say to a very dear friend or your child in that situation. Would you tell them to rest or to tidy the house up? Would you tell your friend that her dh should be able to feed the family/do the shopping or would you expect her to run around to prepare food in advance?
Don’t try to do what you normally do. Let go of that and concentrate on what you can door what is essential

[SirJamesTalbotAndHisSpeculum]

I know that, RainbowRobot but you seemed to be a bit miffed that you'd have to make your own way to the hospital.

Perhaps I picked that up wrong, though.

Did you go to A & E the other day?

[Babysharkisanearworm]

I am in the same situation with a dh that says he gets it but when I am bad, makes snarky comments about me resting. Then, when I complain of pain, tells me I have overdone it!
I just want him to use half an ounce of initiative and do it without being asked or tutting, sighing and kicking off.

[bluebluezoo]

I have a partner who drives with a flexible job who I cannot assume will take me. That is what this thread is about

Have you asked him if he will take you yet? Does he assume you will drive yourself, unless you say different?

If you have him believing you're about to deteriorate to the point you need to make funeral plans, perhaps he is thinking he will need a lot of time off to care for you in the near future, so is being careful not to take too much time off now.

[Myriade]

@sirjames
I have cfs too. For more than 10 years. When I first got ill, i would have done what the OP did. Pushed and pushed myself (and then felt much worse fir it!) but I couldn’t see how I couldn’t or shouldn’t do all those things. I felt like a failure if I didn’t.
And at the same time, if faced with cooking a meal when hungry, I couldn’t do it as I was so exhausted.

[ThatCurlyGirl]

@RainbowRobot

You only seem to be getting frustrated with posters who have questions or are challenging your way of thinking, rather than taking many thoughts on board.

I was in hospital last week yet again after a massive seizure, I have epilepsy. Its shit. I hate it. I absolutely hate it. It hurts and it makes me sad and worried and frustrated. But I and others have tried to encourage you gently to not just assume the worst. That's not minimising, it's trying to help you not make an already awfully stressful time more stressful.

You're increasingly implying nobody understands how you physically feel - I feel that exhausted most days because of my seizures but never want these threads to be a race to the bottom.

Try to understand people aren't just being dicks, they are reassuring you that some things don't need to be addressed until diagnosis and that you can also build as normal a life as is possible after diagnosis, depending on what it is.

You'd like your DH to show some empathy but it doesn't feel like you are showing much to people taking the time to reply to you and trying to reassure you.

[ReanimatedSGB]

I am wondering if the real issue here is that the OP's family are used to her addressing all the domestic work and being in sole charge of the running of the house. Perhaps the H has encouraged the DC to see it all as 'women's work' or 'what mummy is there for', as well.
OP, understandably, has come to resent this. But, for whatever reason, she hasn't felt up to having a straightforward conversation with them about chores, and everyone needing to pull their weight, but gone down the route of 'mystery illness' in the hope that everyone will scurry round fussing over her. OP, not only is that an unethical strategy, but it clearly isn't going to work; it never does.

[ThatCurlyGirl]

@RainbowRobot

Sorry that sounded harsher written down than I meant it to be - basically I think it would be good if you could try to understand that people are encouraging you to remember that things might be ok and even after a diagnosis may not be as bad as you think. People doing that isn't an attack on you or your symptoms, it's supportive rather than accusatory.

I hope things get better for you OP, good luck and fingers crossed the health side of things is ok

[verystressedmum]

I'm sorry I agree with other pp that while you have some symptoms, you are experiencing quite extreme anxiety over this.
It is not usual after having tests but no diagnosis of any kind to start preparing for your death and involving your dc in your certain imminent death.

Your dh was with you for a 12 hour day of tests what makes you think he would not support you through an actual diagnosis? Because he didn't want to talk after a very very long day?

I've spent a lot of time in hospitals and it is exhausting. I'm wasn't the patient but it is still exhausting. Doesn't mean I'm incapable of supporting someone because I didn't want to have a long talk about what you may or may not have.

[Maryscary008]

@RainbowRobot I think that you need to concentrate on how you feel at the moment and what help you need at the moment rather than worrying about what you will need in the future as you really don't know. Therefore if you feel unwell at the moment tell your DH and children what they need to do around the house. Even if it is MS you may feel fine in a month and mostly fine for years to come. The majority of people don't become severely disabled especially with newer treatments and can look after themselves.

[TatianaLarina]

Speaking of CFS, it can manifest with symptoms very similar to MS at the start. Pins and needles, numbness, double vision, exhaustion.

[SirJamesTalbotAndHisSpeculum]

Please don't drive yourself to the hospital if you have double vision OP.

[EtonMessed]

I get OP where your coming from, quite a lot of derailing up thread.

If your DP is being crap (and yes it does sound like he's not made much effort to emotionally support you) turn to friends.
Think what you'd advise a friend and ask for help with logistics and mental load.

Illness is not a competiton, beware of the forums and posters who are in a spiral to the bottom.

(Love Spike's gravestone!)

[GlitterNails]

There are a lot of frustrating comments here. At no point did OP say MS was ruled out in her appointments, just that tests were continuing.

Secondly, some conditions take a long time to be diagnosed. Mine took 8.5 years and was initially told lots of things - it was in my head, Fibromyalgia, Chronic Pain Syndrome but mostly totally dismissed. I then finally got diagnosed and it’s serious enough to be in an electric wheelchair right now. So no, things aren’t always diagnosed very quickly as some said above.

I also never would have been diagnosed without Dr Google and a lot of my own research which finally pointed the right way.

There’s just been a lot of assumptions here and so many women with chronic illness spend years being told there’s nothing wrong with them, it’s in their heads, etc when often it’s not. Most people know their own bodies and when something isn’t right.
I
The OP has now mentioned a number of symptoms - which may or may not be MS. But it’s not the case of her feeling fine and suddenly deciding one day she’s ill.

Finally a family member recently had some symptoms that could potentially occur in MS. The consultant decided to wait to see if their reoccur for awhile so it wasn’t a definitive yes/no - it was a wait and see.

[Namechangeforthiscancershit]

Please don't drive yourself to the hospital if you have double vision OP

This is a good point. Please be safe. A crash is all you need right now, however minor.

[Schuyler]

Double vision should be reported to the DVLA, just for those who may be reading and suffering but not know.

[ReanimatedSGB]

I've had friends go a long time with odd symptoms that didn't add up to anything much, and then finally get a diagnosis. It is frustrating, and it can certainly be extra tiresome if the people around you don't seem to be taking it very seriously.
However, demanding everyone treat you like an old-fashioned invalid capable of nothing but lying on a couch moaning feebly and planning your own funeral is not a healthy or sensible way to deal with it. And, whatever may or may not be wrong with you, wallowing in self-pity and over-dramatizing your problems is bad for you and will make your symptoms worse.

[katewhinesalot]

My Dh is not good on sympathy generally. I've found I have to tell him what I want and need. Spell it out plainly. He's good on the practical stuff, less so on the emotional stuff.

During my cancer a few years ago I could find myself getting irritated that he wasn't very intuitive. It got better when I got upset and told him plainly what he needed to do or say. He very much wanted to fix things and didn't realise that when it's not fixable then he just needed to listen and empathise. I found that women are generally much better at knowing intuitively how to respond.

Get upset. Let all your emotions spew out and direct him as to how he needs to respond. I hope he steps up.

The waiting for a diagnosis is the hardest part. When you know what you are actually dealing with, then you can begin to adapt. A lot of people don't worry until the reality. Dh is probably coping by being optimistic. When it's happening to you, you immediately suspect the worst. Fingers crossed for you.

[SirJamesTalbotAndHisSpeculum]

When is your next appointment?

I hope you've been able to talk to your DH about your feelings before it.

[ThatCurlyGirl]

Hope you're feeling ok today @RainbowRobot

[OvertiredandConfused]

Just caught up with this thread again.

My DH wasn’t so much good when I was in “limboland“. In fact, truth be told, he and the DC still struggle with little things like the examples you have given. I find it very frustrating sitting in my chair at home looking at small jobs that need to be done and not having the energy or, sometimes, mobility/dexterity to actually do them.

One thing that was a bit of a wake-up call for my DH was the fact I didn’t actually take him with me to the appointment where I got my final, official diagnosis and didn’t tell him for a few days. I got a friend to drive me – logistical reasons rather than lack of ability to drive.

When I told him, he was really shocked that I hadn’t asked him to go with me or told him the outcome straightaway. I pointed out that he knew I had an appointment and hadn’t shown much interest so I thought I’d just get on with it.

He doesn’t come to most of my appointments with me now but he always asks and I tend to appreciate his company for the bigger conversations.

[SirJamesTalbotAndHisSpeculum]

How are things now OP?

Has your DH discussed anything with you yet?